Danny and I wrote this OpEd for the New York Times which was not accepted for publication so we thought we would share it here. You might also check out the Diane Rehm Show. One of the guest on the show, SanjayPimplikar, shared his frustrations with me about not getting through to the rather perseverative other participants. So if we need more research why are we promoting these as guidelines now exactly? So are our best treatments only promises of future ones?

Here is our piece:

Recently, the Times has featured four articles, one Op-Ed, and four letters concerning the diagnosis and treatment of so-called Alzheimer ’s disease (AD). This seems appropriate given that 2010 is the 100th anniversary of the first use of the term Alzheimer’s disease by the German psychiatrist Emile Kraepelin, who included a short description in his influential textbook despite the misgivings of his junior colleague, Alois Alzheimer, who doubted that he had described a new pathological condition.
Dr. Alzheimer’s ambivalence, as well as the strong message conveyed by modern research, are not manifest in the Times’ coverage, which presumes that we in fact understand what this label means. However, the two greatest discoveries in the field over the last 25-years are that AD, despite having a label that implies it is one biological condition, (1) is actually quite heterogeneous, and (2) overlaps with normal aging processes. One letter (Czapiewski, July 24th) celebrated the welcomed certainty of the diagnosis, with the author apparently not aware of the great variability in the clinical features such as natural history and prognosis, not to mention the overlap with brain aging processes at work in all of us (as evidenced by confusing new clinical labels such as early- and late-Mild Cognitive Impairment).
Another letter (Eisen, July 24th) argued that any label is rather worthless without a specific therapy, and yet it must be understood that treatment does not just depend on drugs. All of us should attend to brain health issues such as social engagement, cognitive activity, physical exercise, diet, and protection from head injuries. We agree with the Op-Ed piece (“Alzheimer’s Isn’t Up to the Tests”, Pimplikar, July 20th) critical of the proposed new diagnostic guidelines and the underling amyloid hypothesis, but this critique did not go far enough.
Two letters argued about the value of the languishing amyloid hypothesis (Gandy, July 24th; Robakis, July 24th), which is mostly not stated as a precise scientific hypothesis but rather as a political call for resources. The previous dominant cholinergic hypothesis much discussed twenty years ago held that the neurotransmitter acetylcholine played a critical role in AD pathology. Does the FDA approval of rather ineffective, overpriced drugs that are active on this dysfunctional system in Alzheimer’s-type conditions prove that the hypothesis was correct (or not)?
The proposed diagnostic guidelines for AD (“New Guidelines for Alzheimer’s Could Lead to Earlier Diagnosis”, July 14 2010) deserve much greater scientific, clinical, economic, and ethical scrutiny. Do they represent real hope, or more hype? Do they actually benefit patients? The authors themselves say in footnote 3: “These quantitative techniques are, and will continue to be in evolution for some time… The priority of one biomarker over another … has not been established … Therefore practical use … must follow local best-practice guidelines…” Are these guidelines ready for general clinical use? There is little point in using multiple forms of invasive and expensive research tests to assign a frightening and imprecise set of diagnostic labels to millions more people, especially without effective therapies being available.
The many unfulfilled promises to develop drugs should serve as a warning that this field’s marketing is more advanced that its science. Even the esteemed, recently deceased, pioneering gerontologist, Robert Butler, came to realize late in his life that what we now call Alzheimer’s is more than a single disease awaiting a single cure.
In our view, many other thoughtful clinicians and scientists recognize the need to rethink the very label “Alzheimer’s disease”. Unfortunately, much of the current writing perpetuates the myth that more biomarker studies will lead to greater precision in diagnosis and that a cure, or at least much more effective therapies, are right around the corner. The appropriate use of increasingly precious resources demands a life span perspective to healthy brain aging that protects individuals, families, and communities as much as possible against the genuine suffering that can occur with long life.

Peter Whitehouse MD-PhD, University Hospitals and Case Western Reserve University and Danny George, Ph.D, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center

Comments

I totally agree with your point !!! We did actually blog on the same topic yesterday… (http://mythe-alzheimer.over-blog.com/article-l-empire-alzheimer-ne-desarme-pas-54988653.html)
The recent guidelines promoted after the 2010 ICAD’s conference reinforce a categorical and biomedical approach to problematic cognitive aging. They admit the heterogeneity of the so-called Alzheimer’s disease, but instead of admitting it is not a single process, they build up new categories that are totally “pulled by the hair” (as we say in French) to try and account for the multiplicity of clinical presentations of so-called Alzheimer’s disease, instead of admitting it is the result of multiple underlying processes : an increasing number of data shows the complexity of factors involved in the process (biological, psychological, cultural, environmental), all life long. This, as you write it, should lead us to promote a life span perspective to healthy brain aging…
Also, they promote expensive investigations (through biomarkers and neuroimaging) whose validity and relationship with a cognitive impairment has not been proven (of course, as there is no single process to target…).
This does not mean that investigating cognitive aging is useless, but that it should be done through a dimensional approach, instead of a categorical one, and that applying a stigmatizing and frightening label to people on this basis is profoundly unethical and useless, especially as there is no efficient medication to offer… And, as you say, there is no need to have results from expensive tests to encourage prevention through physical activity, social involvement, stimulating cognitive activities, stress reduction, that may delay cognitive impairment! And the money spared could be more efficiently used for social support (both for the people facing cognitive problems and their carers), cognitive and psychological interventions, a better integration of elderly people within the community, etc.

I think the proposed Op Ed piece should have been published, and I am surprised that it was rejected by the NY Times. It thoughtfully presents a very informed alternative perspective, which seems to me deserves much attention (especially, now that I better understand it myself).

On the other hand, I can also understand the push for progress and a cure on all fronts. You need only experience what dementia can do to a loved on (as well as those who love) to understand the urgency of attempting to address this terrible condition.

It is certainly true that the push for early detection using biomarkers may well be a boom to drug companies and may alsocreate a great deal of unnecessary anxiety in people who get labeled as those who likely may develop AD based on such tests.

But what is the alternative? Of course there needs to be much more focus on good habits for brain health, but beyond that, should not scientists continue to press for a cure? And should we interpret failures as a rationale for abandoning such attempts, even if there are people who might exploit for gain whatever those attempts may be — whether successful or not. Such people are always there, but they are the persistent epiphenomena of a drug industry based on capitalism. I don’t think their existence is an argument in itself for throwing the baby out with the bathwater, unless one feels that they alone are driving the call to battle, which is obviously not the case.

In the early days of research on the causes of heart disease, it was thought that ingesting eggs was something to be entirely avoided by heart patients. Subsequently it was found that cholesterol in one’s diet is much less important than saturated fat. But for a time heart patients suffering from atherosclerosis were advised to entirely avoid eggs. A blind alley, yes, but one hope’s that the maze that one attempts to fathom through scientific inquiry has one or two fruitful avenues as well, that in this case may indeed lead to treatments and perhaps a cure for Alzheimer’s disease.

Dear Anne-Claude and Robert, thank you for your wonderful and articulate words. I agree that we should not give up on researching cognitive challenges. Robert, I feel and understand the tragedy of dementia but also appreciate that these sad emotions must not limit our thinking and valuing about appropriate scientific and social responses. How much money should be put into research on fixing the various forms of brain aging? Should we try to cure aging itself along the way? Just because we want to cure something does not mean that something exists the way we think it does and is waiting for us to spend enough money to cure it. I find more hope in research on healthy life styles and improving learning organizations (like schools and universities) for us all and in general in community responses.

Hello,well spoken, well reasoned, well supported. and well-well mostly ignored by those living in the Alzheimer’s bubble. Some how they are able to receive money from the outside in, but can’t find any reprecstsble results to pass from the inside out. Some how they listen to each other more than they listen, read, and discuss with others what goes on inside the bubble.

Press released are posted on the inside wall so those of us on the outside can read them, but can’t make corrections on them.

Why is when others think of reasons why we should money on research about dementia they always remind everyone how terrible it is, but then don’t champion research to figure out how to take out some of the teribleness through psychosocial interventions? Everything is seen through the dark glass of an empty pill bottle, instead of the tear-filled eyes of those living directly and indirectly with the symptoms of dementia.

We keep missing the forest (the millions and millions of folks living with the disease) in favor of arguing about how many trees, what variety, how fast we should plant them, how much we should fertilize them, and which ones are weeds and which ones are trees.

Let’s spend more time and energy looking beyond the researchers and drug companies, and cheer leaders living in the 30 year old glass house they themselves built, and look around and respond to the what is happening in the rest of the world.

Its a tsunami of dementia sweeping across the world! Isn’t it time to support the folks whose self esteem, sense of self, family stability, love is being washed away by the symptoms of dementia?

Richard, master of the mixed and mixed up metaphor, and persons living with the diagnosis of Dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s features.